Daily Life

Guide for and by parents

A reference

The Parents Guide is a book put together by some thirty parents of children with Down syndrome with the Families and Daily Life Department of the Foundation. The book came into being following two observations:

parents of young Down syndrome children want to know “what to do and how to do it” and do not always find safe and wise advice

parents of older Down syndrome children, being able to step back a bit, can share their experiences and bring out positive points

allows each participant to expand, deepen or consolidate his knowledge

During the working sessions, these parents try to bring out the tips and hints to use, the best attitudes to take and steps to plan on.

It is a matter of synthesizing information from experiences which have facilitated the life of the child and his family and which have helped him progress in all aspects of his daily life.

The guide has been reviewed by the Jérôme Lejeune Institute medical team to ensure that none of the advice would lead to harmful consequences.

It is therefore not an educational handbook, scientific publication or medical tome, but a guide for and by parents on daily life with a child with Down syndrome.

Guide for families and those close to them – Down syndrome

New Treatments

When the obstetrician says these words, the world turns upside-down and nothing will ever be the same again.

What will the handicapped child’s life be like? How will our lives be changed? Is treatment or rehabilitation possible? You do not always know who to ask or even how to express these questions. Sometimes you do not even dare ask. Here, specialists answer your main questions and orient you to this new world you must discover. They also know that your child is unique and that taking care of him requires answers adapted specifically for him. This guide does not replace the dialogue with your physician, but it will allow you to better understand his explanations and recommendations.

Dear Future Mom

Our newsletter

Institut medical office

About

The goal of the Jérôme Lejeune Foundation, a recognised public interest organisation, is to continue the work to which Professor Jérôme Lejeune, discoverer of Down syndrome, devoted his life: medical research on genetic diseases with intellectual disability, receiving and treating children and adults with Down syndrome or other genetic defects of intelligence ; in offering specialised medical consultation treating all their pathologies linked to their disease ; the defence of life, the respect for the patient's dignity, with a constant ethical focus and active solidarity, from the beginning of life until death.